[kslade15]

I call myself Princess...

My journey with Lupus has been a very familiar one. 1992 I test F/P for RPR, got the shots thought everything was fine. In 1993 I became pregnant, had a series of blood work and I was told I had a "funny antibody" and if it was to react they would treat it with baby asprin. Never reacted. Lived a normal life and in 1998 had my second child and was in a car accident. I had never felt so much pain in my life. I couldn't get out of bed:worried: I went back to the doc and he gave me a scare....I thought I had AIDS the way he reacted. After threating his licenses I choose another doctor who diagnosed me with RA....He passed away so I went to another doc who said I had Fibromalysia (SP?). My insurance changed and doc changed and finally was diagnosed with Lupus. By this time I have the imfamous rash, joint pains, fatigue. He put me on Plaqenil and Prednisone. It really didn't work. I wanted something to help me walk. I changed my docs again. This is when I started becoming educated about my diease.

I have went through a body change (prednisone), hair loss, limp sometimes, tired all the time and ended up pregnant again. I had him early (7 months) 2007 baby is a year almost 2.

I spend a lot of time being scared, tired, depressed, in pain. The past couple of months has been okay... not much joint pains but rash on my face is pretty bad and MY HAIR is gone on the sides. I think I am getting ready to go through another flare. :worried:

Any suggestion on how to make my life eaiser would be great...I know the hair this is vanity but it is important to me. I feel so unattractive sometimes. I have no energy. I hate the meds but have to take them. I hate the pain but can't do anything about it....:sad:

 

[Maia]

There is no magic bullet to living with this disease - unfortunately. You've lived with this for 10 years now - can you think back to what may have helped you before at all?

I can only offer the generic advice really - possible a change in medication may be in order or new ones may need to be added. Rest when you can (hard with kids I know!). Stay out of the sun as much as possible. For the hair you could try a different style or length - or maybe if it's really bad beyond the point where a hairstyle change could improve things you could look into a wig. They really make some excellent wigs today.

There have been some suggestions for covering up the rash with makeup in the Looking Good Feeling better forum, I know one suggestion was Lancome Tient Idole (I use Lancome but not that one as I don't need that much coverage normally).

I have to tell you though, to me, you sound quite depressed. I don't know if that is the case or not, but if you think it may be contributing to how you are feeling/doing right now, then you should probably let your doctor(s) know about it and get help for it. Medication or counseling can help greatly (I especially recommend Cognitive Behavioral Therapy especially for those who have to learn to live with a chronic illness).

Best wishes to you - I hope you get back to feeling better someday soon.
(((hugs)))

 

[Lyn57]

Hello Princess (lovely name) :hello:

I am sorry to hear you are having such a tough time of it. Your post sounded very sad.

I absolutely agree with Maria, I have found anti depressants and counselling to be of great benefit to me. Coping with a chronic illness is extrememly hard and it wears you down, any help you can get is important.

Sending you gentle hugs and best wishes that you start to feel better soon.
:rose3: